Oliver update #2 - Heart concerns

While we visited Oliver yesterday he had a severe heart rate deceleration - the heart rate plotting line went flat, the monitor alarms went off, nurses came running, and his mother's heart started beating twice as fast to compensate for his lack of cardiac activity.  The doctor and nurse have told us that he has had a couple of these heart stopping moments, often followed by an extreme increase in heart rate as his body tries to kick itself back into gear, several times a day for the past few days.  Today a specialist came in and started a detailed, 24-hour study of his heart that will hopefully inform us about what part of his heart is causing the problems and how it can be resolved if he doesn't grow out of it himself.  His little chest is half covered with sensors and wires!

Talking to the doctor was very reassuring today as she explained that little babies, especially preemies, are much more resilient than adults in bearing extreme heart rate changes, and that even going a day with an extreme heart rate does not cause any damage.  That was a great relief!  So far Oliver has been able to recover from each of the incidents on his own within the 5-10 minutes they give him before they would start intervening to get his heart rate back to normal.  We'll get the results from the heart study probably by Friday. 

Two weeks old, 5 lbs 6 oz.

Oliver is two weeks old or 37 weeks old, depending on how you're counting.  Technically he's "full term" now!  He's been consistently gaining weight (5 lbs., 6oz!) and he's just started to wake up more often and be more alert.  Today is the first time that I've seen his eyes open for more than a few minutes.  It was so fun to watch him follow my face from side to side and stretch his neck to look around (not that he can really see very much yet, but he's noticing something!).  The nurses have commented several times on how calm he seems to be all the time, so I've really been enjoying the few times he gets some volume when he cries.

He really woke up after he got his bath yesterday.  My mother and I got to be there and help - he didn't mind the bath but he hated being dried off!

As for me, I've been doing well and am still trying to rest and heal.  I've been cutting back on the pain meds and I was discouraged at first at how sore I still am, but I'm so thankful for several friends here who keep encouraging me to be patient and keep resting. 

Oliver update #1

We got the results from his chromosome test today - there is NO EVIDENCE OF A GENETIC SYNDROME!!!!!  He has a complete set of chromosomes with no obvious duplication or errors!

*** EDIT: a day later, after talking with another NICU doctor, we understand better that the chromosome test that was completed for Oliver was a very basic test that looked for "obvious" and common syndromes, such as duplicated or missing genes.  It could be that he still has a syndrome, but it would be one that is less common and more difficult to see, such as a genetic "spelling error" in a particular location on a particular gene.  We will keep watching as he develops and if/when other symptoms of a particular syndrome appear, then we can go back and look at his chromosomes in much more detail at particular locations.  So, the results from this first test are still very much worth celebrating, but we will still be carefully watching his development and continuing in prayer.

We'll still be working through all of his congential "defects" (I hate using the word "defects" about our perfect little Oliver, so I think I will call them "uniquenesses" instead, at least until I find a better phrase!)  We'll still be working through all of his congenital uniquenesses, but it won't be with the label or expectation of a particular syndrome hanging over it all, at least for now.  We praise God that so far his little body has been funcitoning ok!



Life in the NICU

I am so thankful we live only 10 minutes from the NICU.   I am so thankful that he is doing so well and that we can hold him whenever we want, and can invite our friends to hold him as well.  I am so thankful for so many dear friends who give me rides to the hospital while Joel is at work.

I try to be in the NICU to hold him through at least two of his meal times a day.  Right now he is in a a NICU room where two nurses care for 4 to 5 babies at a time.  When ever I come to visit him I can do all the normal "mommy" things - change his clothes (provided from the NICU while he is there) and diaper, take his temperature, pick him up and hold him, and encourage him to start nursing during meal times while he is still being tube fed.  They provide recliners and chairs for visitors.  When I want to let him rest against my skin the nurses draw some curtains and set up a screen around us for privacy.  Often the lights are turned down low so that the babies rest easier, but that also puts me to sleep too!

The best estimate of when he will get to go home is around his due date, which is the expectation for most premature babies.  So far he continues to grow and behave just like the doctors expect for any baby born early at 35 weeks. 

 

He doesn't open his eyes too often yet, but he is getting more active everyday!

Here's a summary of his current situation:

• He is breathing room air with minimal "help" from a nasal cannula - it just provides a very small, steady stream of air to help him remember to breath, but he does very well without it too.
• He is digesting milk very well and they are gradually increasing his food volume every meal.
• He is maintaining his own body heat and now is in a "big boy" bed - a smaller "crib" instead of a hooded incubator
• The two echo cardiograms (heart scans) they have done since his birth have shown a thickening of the lower heart walls and three slightly "leaky" valves, but his heart is still functioning normally and well and his heart rate has remained consistent and strong.  He'll have another echo cardiogram before he is discharged, and then the doctors will decide how often to keep checking up on it.  We are hoping and praying that his heart will will heal or at least remain stable and not develop serious problems. 
• The ultrasound for his kidney confirmed that the left kidney did not develop normally and probably is not functioning.  The right kidney looks normal, and is functioning well (he fills his diapers!).  We will see a specialist at OHSU in Portland sometime soon after Oliver is discharged to learn more about how much, if at all, the left kidney is functioning and to see what may need to be done about it. 
• He will have an MRI on his brain just before he is discharged so see if that will tell us anything about the dilated ventricles and "webbing" in the ventricles that they saw in an ultrasound just after he was born.  Even if we don't learn anything new from the MRI we will be especially attentive to Oliver's development so we can be proactive about any special needs he may have. 
• An x-ray showed that his arms, legs, and overall structure is just the right size, and not particularly short like they thought based on the ultrasound, so he's little but just the right size for being born at 35 weeks!

Sibling introductions

Elsa adores her little brother.  Of course she has known all along that we were having a little boy named Robin Hood, but thankfully she has accepted the name Oliver without any issue.  She made a darling card for him, and tells everyone "My baby brother Oliver knows who I am because he likes to hold my finger."

Nora was pretty excited about seeing the baby in the enclosed bed, and tried hard to get her hands on him to play and pat the baby like she does with her "Anna" doll at home.  Unfortunately I don't think that Oliver would enjoy being lugged around the house in the manner to which Anna is accustomed!



Oliver Michael Dunham - our little Elf King

Decision Day came Sunday, March 25th.  The nurses saw several longer-than-acceptable heart rate decelerations early in the morning, so they called my doctor and the perinatologist who who came over and quickly did an unscheduled ultrasound to check on the baby.  With the index they use, normal fluid levels should average around a 15.  They sent me to the hospital when the index level dropped to a 6, and it had continued to decrease slightly each time they checked.  This time she found that the fluid had dropped further to just above a 3.  They had been trying to keep the baby growing inside of me for as long as healthily possible, but now the fluids were definately too low and the risk of damage to the placenta and cord were too high.  It was time for us to meet our baby!

Then we had to decide on how to have the baby - induced natural labor or C-section.  Most of you who know me well know that I DID NOT WANT TO HAVE A C-SECTION.  My doctor is wonderful - she was so patient through all of our questions and would have still let us done whatever method we wanted.  It soon became clear to us though that the best choice for the baby, in our situation, was a C-section.  My first two labors were relatively long though very simple and uncomplicated, and we didn't know how my body would respond to being induced.  Every time there's a contraction the baby essentially has to hold its breath as the the blood vessels and everything tightens around it.  Considering that we has already been seeing some heart rate decelerations before any contractions had started and the "padding" fluid around the baby was so minimal, there was serious concern that the baby would not be able to sustain the pressure of natural labor and we would have to do an emergency C-section anyway. 

So, after weighing the options and risks, and praying fervently for God to help me overcome my great pride in having only natural, unmedicated births and my fear of being awake while having a major surgical procedure, Joel and I decided that we would have the baby via C-section.  I was filled with such a comforting peace after we had made our decision, and I knew we had made the right choice.

It was a most difficult but incredible experience.  I will spare you all the details, but that I was amazed that from the time we made the decision it took less than an hour before I could hear our son crying on the other side of the blue screen across my chest.  Though I didn't get to actually see him or hold him for another 7 hours as I recovered and he was "tucked" in at the NICU, I cried with him to hear his lungs working and the ohhs and aahhs of Joel, the doctors and nurses as they told me he was pink, with good muscle tone, and ever so cute.  My doctor confirmed that there was hardly any fluid around him, but that the placenta and cord were still very healthy.  It was so great to have feel a confirmation that he was delivered at just the right time - he stayed inside as long as he could but came out before any damage had occured.

Joel held my hand the whole time and stayed with me until I was calm and resting back in my room, and then he went to Oliver's bedside to hear the doctor's report for him.  I was so blessed with such a wonderful team of doctors and nurses for the procedure.  Besides Joel, the only other man in the operating room was the anesthesiologist, and he had such a sweet and gentle spirit that really helped me get through it (I almost fainted, but my doctor and nurse held me up and kept me still for him to finish the spinal).

He is finally here! 

Oliver Michael Dunham, March 25th, 4 lbs. 11 oz.

His name comes from the olive tree.  In the Bible the olive branch symbolizes peace, and "Michael" means "who is of God?"  For us his name means "Peace that is of God," because that is what we have been learning about for the last several months. 

James 1:2-4 "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything."

I thought I knew about God's peace, but I realize now that I was previously lacking that "peace that passes understanding." We praise God that he has used, and is still using, this trial in our lives to draw us closer to him as we mature and learn about true hope and perserverance. 



The name Oliver can also mean "Elf King" or "Elf Army," which will go very nicely with the Fariy Princess and Pixie that we already have at home!

Hospital hostage

On Tueday, March 21st I went in for my regular, twice weekly ultrasound at the Maternal Fetal Medicine Clinic for the perinatalogists to check the Little One's growth and fluid.  Unfortunately the fluid levels had dropped and I was told to check into the hospital in two hours!  I had planned a morning out to do errands!  My friend was watching the girls for me and I needed to get groceries!  No!  Our baby wasn't supposed to be here for another five and a half weeks! 

Well, since the baby's health was more important than my grocery trip I checked into the Rogue Valley Medical Center for continuous monitoring of the Little One's heart rate and a plan for another ultrasound in the morning.  And with the most beautiful and timely bunch of my favorite roses that my husband has ever given me.  They stayed fresh and gorgeous the whole time I was in the hospital. 

If the fluid levels continued to drop then there would be no protection for the baby, placenta, and umbilical cord and thus a greater risk to the baby if anything was damaged.  At the hospital the nurses promptly put me on "bed rest," got an IV started (after two tries! I HATE needles!!!  and I think needles hate me too!) to put a total of three liters of fluid into my system, and told me to drink as much water as I could to try to increase the fluid level as much as possible.  Unfortunately the fluid level was mostly up to the baby's urine output, so it made sense that with only one functioning kidney, our Little One was having trouble producing enough. 

The girls handled my sudden departure fairly well.  We had just told Elsa that the new baby may be "sick," so she understood why the doctors needed to be careful and watch the baby closely at the hospital.  Even so it was very good when they came to visit the next day.  Elsa got to help the nurses monitor the baby's heart rate and they both thought my bed was absolutely exciting with all the buttons.  My bed was like a carnival ride!

Over the next few days we kept monitoring the baby's heart rate, watching for "d-cells," or decelerations, the perinatologists came about every other day to check the fluid levels via ultrasound.  The baby's heart rate was mostly strong and stable, but the fluids kept dropping each time they checked so we kept waiting and I kept resting (or trying to!), drinking tons of water, and ordering whatever I wanted from the hospital menu.

These days were so very strange to me.  I had never been admitted to the hospital before except when I was in labor, and then we were busy the whole time until we went home the next day!  At first the prospect of day after day in bed in the hospital with nothing wrong with me was very challenging, but I began to count my gifts again and realized that this was an incredible, unexpected blessing.  God knew just what I needed before the baby came:  a forced time of rest, with my husband at my side, with no dishes to cook or clean, no toys to pick up, no laundry to fold, and all with complete confidence that my girls were being cared for.  Plus, this is what I could "do" for my baby.  I couldn't really do anything to help my Little One's condition, but I could rest and work with the doctors and nurses to be prepared.

I will be forever thankful for the friends that changed their daily plans to care for our children at our home, and for the sweet spirited nurses who took turns caring for me.   God sent some of the most perfect women to watch over me during these days.  They encouraged me, told me their own stories of challenging but blessed childbirths and caring for special children, and patiently answered all my many, many questions.  Also my mother was able to get a last minute plane ticket to come and help us.  She arrived late Thursday night, and we were all so happy to have her join us. 

We also had several visits from dear friends during our days of waiting and they were so encouraging to us.  As the reality of the situation for our baby continued to sink in for me as the days passed I definitely found myself emotionally struggling through all the possibilities, but it was amazing how God kept providing just the perfect, strengthening and affirming scriptures, visitors, and phone calls. 

On Saturday my family took me out for my first ever wheel chair ride!  I got to watch the girls play on the hospital playground, and we all had a wonderful time in the brisk early spring morning.